Caregivers bear heavy burden not often seen

By ERNEST HOOPER
Published May 17, 2007

Doctors, researchers and other providers often guide cancer patients through the difficult maze of care.

But what about the person making that challenging journey with the cancer patient? What about the spouse, parent or child who sleeps in the hospital to stay with the patient? What about the caregiver who witnesses the pain and nausea endured by the loved one?

Miriam Innocenti says seeing such trauma creates a kind of adversity for the caregiver that you can't ignore.

"The burden of caregiving is not understood by the cancer patient, the general public or really the health care professional, " said Innocenti, a licensed clinical social worker at the H. Lee Moffitt Cancer Center. "There is a feeling of being alone, a feeling that people don't understand what they're going through."

Innocenti, who works in Moffitt's senior adult outpatient clinic, said caregivers need more attention. She leads a discussion for and about caregivers at Moffitt's Strength For Caring Program.

The program focuses in part on the caregiver's emotional vulnerability. Innocenti said every caregiver reacts differently, but some feelings appear universal: fear, guilt, anxiety and depression.

Most caregivers fear the uncertainty of cancer treatment, the death of their loved one and their own mortality. Guilt may come from worrying about the future instead of the patient.

When Innocenti gathers her caregiver support group, she often senses another emotion: anger. Caregivers resent the disease and the disruption it creates in their lives.

"The anger is so palpable you can feel it in the air, " Innocenti said. "But it may not be verbalized until we give them permission to talk about it. Then they discover that others feel the same way."

Innocenti said upon the cancer diagnosis, life changes for all involved. Dealing with the issue involves the patient and the caregiver finding what she terms a "new normal." If the caregivers don't set aside time to look after themselves, they may end up jeopardizing their own health. Yet they resist asking for help.

Education and support prove to be vital. Understanding cancer and the various treatments eases anxiety.

Support groups give caregivers a safe place to discuss their emotions. They also give them a place to find good advice. For example, some cancer patients who have small children choose not to give the kids an explanation. Innocenti said keeping cancer a secret only increases parents' stress. Plus, even a child as young as 4 may sense a problem in the household.

"It's important to tell them at a level they can understand because it reduces their anxiety, " said Innocenti, who also recommended letting school officials know if the child has a family member battling cancer. "You have to reach out and normalize things for children."

Hopefully, the path to that "new normal" begins on Saturday for some caregivers. It's not a journey they need to make alone.